Would you believe mouth and lip ulcers in radiation?

Hi, I've been told that i need to update. U no that I took 2 days off on the 24th and 25th-Dr. Garg said I was burning too much. I had a sore on the corner of my mouth, a big ridge inside my lip from where my teeth touched it. It didn't hurt, but it made me feel sad. Then my lip was quickly getting sore and scabby. This Tues. Dr Garg told me they were ulcers, and people usually didn't heal so quickly. He didn't want to say ulcers the week before and freak me out. Other than that, I'm doing OK- eating like a horse and not losing weight. Also the ridge inside my mouth went away. While he was asking me how I was doing,I ran my tongue around-and it was gone. It went down just like that. I think that this one tumor just isn't responding. I think that they upped the dosage- it used to be a whirl and zap--- zap. Now it's a heavy growl and the treatment is lasting 5 seconds longer. You know the optic nerve-is in the back of the head-the first time they did that-it seemed like i could see my brain and then my skull-then I was looking through my face. I got a headache like you wouldn't believe. I came home- hurt too much to rest-so I went out and cleaned up after the dogs. It was about 32 with an icy wind coming off of the mountains, and the headache went away. Now I'm feeling really good. I was really exhausted yesterday-so I had my son drive me to the clinic. He's done that the last 2 Fridays. My face looks like a lobster now and people are staring-it makes my nose look pretty lop sided. In case you haven't figured it out, I don't spend much time in front of a mirror. I went down to the local muslim FAX, FEDEX place. Real strict-women wear the chadra, men gowns, beards, prayer beads, etc. Very proper and unemotional with infidels, they got upset with their son because he was smiling one time when we were talking about deep sea fishing. Anyway the stern unemotional family leader saw my face last weekend, and some tears came from his eyes. He didn't stare, but treated me like normal. I have one thing upsetting me. My son's girl friend has always been love-love-I'll back you up, if you need anything I'll be there for you. I asked her if she would be the person to take authority to pull the plug. A person doesn't even need to be in the state to do that. It doesn't mean she's responsible for any bills, etc. I just didn't want my family to have to do that. She wouldn't. Then I happily told her that I wasn't losing any weight- and she made a snarky comment in a snarky voice that she heard about my 'so called diet'. I was going to donate my skinny clothes, when I was told that I'd lose lots of weight. Now I'm growing out of my fat clothes. I tell you, this will be an odd discussion for Dr. garg. About the 3rd week I began doing stretches and weight lifting about half of the week. But I'm wondering if I need to keep up the high calorie intake.

Thanks darling. Thanks for the prayers, as I'm having doubts about the radiation. Food tastes good, but I'm sort of tired of packing in iron, protein, and calcium. Yesterday for breakfast I had yogurt, deviled eggs, cream of wheat enriched with dry milk-no sugar, then I lunched on corned beef hash with an egg poached on it, cheese and crackers, string cheese, steak about 4 oz, rice, yogurt, canned pears-and i skipped my evening malt. They tell me to eat mashed potatoes enriched with dry milk, and made with whole milk and to cover it with a milk gravy. I don't like milk, so I get most of my calcium from cheese and yogurt. I eat about a pound of cheddar cheese every 4-6 days. Can you imagine how difficult this would be without a sense of taste? Also most people get a nasty chemical taste in their mouth and the food tastes nasty from radiation or chemo. One woman in the clnic is having chemo and radiation at the same time- I thank god for the small things.

I was loosing weight on purpose before this happened. I like cheese thank god and better yet it tastes like cheese. Did I tell you that I feel like a calf being fattened for the slaughter? Time to eat. .

Oh my gosh don't say that about being fattened for the slaughter.. No! ... you are funny and I totally understand you're getting tired of eating all that, but you can taste yay!! Not only are you a strong woman, but you have so much humor for all you're going through is just amazing, I love it!! May I ask a personal question? Do u live alone and do you have jst ur son, or do you have more family to support you? Not saying your son and son's wife isn't enough, but I was jst curious?

Well, I have a son and grandson living here. It's my son's house. He's a 150% disabled vet. He has a variety of permanent injuries, and they messed up his mind too. I'd be homeless without him, but I try to care for him. He's divorced-so it's his girlfriend that I'm talking about. The Quality of Life counselor that fills out the legal papers wasn't surprised. I guess he's heard that one before. I'm there girl-Anytime you need something, I'll help you.

That's wonderful living with family, and you being there for your son. You are there to help one another, so awesome!I can't even begin to imagine how you do so much with all you're going through. I do know though that you are a very sweet lady and you will be blessed greatly.

Thank you, you're sweet too. Because of all the drugs my son takes, the main problem was the house falling apart when I moved in. He's a good cook. He's a good driver, but the rest can really suck. I think it's a combination of being oblivious and being overwhelmed about doing things. The dry wall in the ceiling was actually coming apart. I patched it up. I painted the whole house, remodeled his bathroom with a friend. spot patched his roof- finally got him to have a professional roofer come in-it a flat pueblo Indian type of roof. A friend and I built a nice covered patio, I did pay my friend. His son and I reroofed his storage shed. I do dump runs about one a month-because of the statin poisoning I lost the ability to load the truck mow the lawn and vacuuming is so painful. I bought some cabinets kitchen cabinets, installed them, made my own counter top and finished it. I installed ceiling fans.

I built shelves in the pantry--bought him a new freezer, couch, hired someone to take out his old carpet and lay a tile floor in his bedroom. The toilet ran over and I was scrubbing the kitchen and and pantry down, etc. I went in the hallway and water was running out of his bedroom. His room stank anyway, because of his cats. Then I have Medicaid saying that I need to declare income for staying here. Thank God theat IRS changed that. I'd buy some steaks for me and a boyfriend. I'd look in the freezer and they'd be gone. His girlfriend called up and said that he was so sweet to bring prime cuts. I told her that I bought them for me and my boyfriend. He can't handle talking on the phone to Comcast or anybody, so I call them, etc. When I worked he called because a glass broke-that's part of his trauma-broken glass all over the ship when it righted itself. I used to drive 60 miles one way to visit him everyday when he was hospitalized, now it's not so hard. Drive him to the hospital. More than once, he drove himself, then something happened, and I'd have to catch the bus, go get him, drive him home. Connect his tens unit. He's been so run down because his son is a felon, a sneak thief, my son gave him money-because he feels guilty that his son is a felon. Helps-that his X, put the whole burden on him. Now this. I don't see how he's taking it.

Meyati,Thanks for the update. I liked the story about the muslim man. People everywhere do care, and of course us on DC. About your daughter-in-law, I can understand how a non-family member could think it would be scary to be the one to pull the plug. That's because family members could be very angry with her. That can happen even within a family. There have been national stories on that issue where legal fights come up. And you never how people will react until it's happening. She shouldn't have made the snarky remark--immature of her to handle her distress over the question in that way. Is she overweight and jealous of you getting to eat all you want? I think that you should inquire about continuing to gain so much weight. It may be you were told to eat so much because they were more afraid of you losing so much weight. I don't know. It sounds like you're handling the radiation so well. You're a fighter and a true good spirit. Thanks for filling us in.Sara

I'm supposed to eat 3 eggs a day, dry milk added to everything-to stews-cream soups-cooked cream of wheat-cream of wheat is listed as the top cereal to eat because without milk it has 50% of daily required iron, 20% calcium, 10% folic acid, 6% niacin, 4% riboflavin, 10% thiamin, and it's easy to digest. For some reason I'm not supposed to eat fruit-I think it's because of the acid on the teeth. The only veges are mashed potatoes, boiled to mush carrots., and I eat whole baked sweet potatoes without sugar or margarine, so we don't crack our teeth while eating or get sores-ulcers on our gums and between our teeth. I can't stand the thought of having radiation with food particles between my teeth. I have a tooth shield-but--We're told to floss, and floss. We eat like this to keep the organs healthy, to try to keep from losing our hair and teeth, to keep our bones from breaking and, sadly, to prepare us for another go around of some treatment.

I brush my teeth about 6x a day- and fluoride it 3x to try to keep my teeth from rotting out. Radiation is very hard on the kidneys. Teeth, bones, and kidneys are the big worries and side effects. Being heavy to begin with isn't a plus, unless the person is bulking up like a weight lifter. I never bought into the carbohydrate thing- and the USDA admits it was a mistake. One of my hobbies is weight lifting-not for competition-but for enjoyment. The doctor and ACS recommend Yoplait yogurt, because it has less sugar. I'm a Cream of Wheat and Yoplait fan anyway.

I think that you right about several things. She's my son's girlfriend, yes, she battles weight. She has her own home. She doesn't like dogs or sawdust on the floor or paint brushes drying over the bath tub, nor my guns. My son is a disabled vet, he might have trouble handling it. Because of family squabbling -people blaming others-arguing about this or that, I wanted Sharon to be the person. She acted like she'd be stuck with bills. She wanted to go to the Quality of Life counselor-take the form to a lawyer-then think about it.I have specific events. Like-I do not want to be in a coma for more than 3 days. I don't want a staff or nurses to touch me, hold my hand, etc. I do want to be clean, and have my face and lips kept moist. I want all the pain killer they can give me. I do not want to be revived at all if my heart stops. I firmly believe that many doctors interfere with God's plan. As far as being touched, I had a horse grab my shoulder, shake me, and throw me over a fence. I was so mad. I couldn't move my arm because my shoulder blade was dislocated. I went back into that corral and kicked the stuffing out of it- backed it into a corner and kicked it in the chest non-stop. After that, when somebody went into the corral- that horse backed into a corner and stood still. When I get a massage, it can be painful if the person tries to massage out the scar tissue knots. It healed like spot welding, so every so far there's a knot. Then being in corrals- a horse or cow will try to walk over you-an Alpha horse will just walk up and push another horse out of the way. Then I taught at gang schools, where you just watch your back. Somebody bumps you and you turn and face them in an angry manner. I do not think that it would be restful to me in my time, for people just walking up and grabbing my hand or trying to massage me.In this state, they have to get stupid permission of an authorized twit to pull the plug. What's so f**** hard about counting to -1,2,3, pull the plug. I said that I don't want my family there- I don't want anybody to read a stupid letter that says that I love them. I don't want any counselor to make them say they forgive me-I don't want them to have an ordered counseling. If anybody wants counseling they can go out and get it. What is so complicated about that? 1,2,3-pull the plug. I just don't want them fussing and second guessing, so I wanted them to call Sharon, since she says that she loves my son so much. It's not like they've been dating for 2 weeks.

And Meyati, I greatly applaud you for all that you are doing to help yourself through this process. It is very impressive with your diet and your teeth cleaning. Really. That's a lot for you to do. Sara

Ah, Sara-I'm trying to keep it simple for my family to help reduce their stress. I had anesthesia for a routine colonoscopy-and it really bothered my son. He became so agitated that the nurses asked him if he needed any care, if they should call somebody for him. The family doesn't feel that he'd do to well, if it's not cut and dried as you put it. As I tell the counselors, nurses, and doctors that the person that has something like cancer isn't the only one suffering. Right now, we can laugh together, and I can tell them that I love them, which I do.

Dear Meyati, I'm so proud of the courage you have shown during what must be the most difficult times in your life. I love the humor you inject into your updates. You keep on chugging along, Meyati!Seeking peace,Tee

meyati, You have much strength for what youre going through. Yo remind me a little of when my sister was going through her cancer. I admired her courage and determination, just as I do yours. You are truly my inspiration. I love ya girl. Many a prayer will be coming to you from me, friend. Love, Ruthie

Hello Meyati. Keep on truckin'! Your feistiness adds the energy to get through this. I asked my husband and daughter if they would pull the plug. They were scared to death. Ha-ha. I did point out that I would be going not them. Anyhow, I got my friend to sign the agreement. She is 100% for my wishes and agreed that close family has too many doubts. Your sons girlfriend hasn't seen enough life yet to get it. And she is not married into the family. I think you get it.

Do you have a DNR? Did you sign the paperwork with your end of life wishes? Power of attorney? That will settle it all. Did my paperwork a long time ago. They had time to adjust. I thought it kinder that way. It is almost eight years now. Docs thought five was highly optimistic. Sure helps to have a good group of doctors and a strong friend. Also all the great encouraging people here. Every day is different. Enjoy. Karen

It took me 2 years to get a DNR at this health system. The state now requires a doctor to fill it out- and my PCP always had some reason to do it later. I went up to oncology and had a screaming fit and got one.

The have what they call "5 Wishes", where they ask you all sorts of things. I've been around some people that lost so much weight that it was agony to have a diaper changed, and they ate only teaspoons-so this asks you if you want your diaper changed or not.. What type of music you want to listen to. It asks a question-and then gives you 5 options. I was doing that, but my answers needed a DNR. Like I would not want to be in a coma more than 3 days. It has if I want somebody from the hospital to tell my family that I forgive them, that I want them to forgive me, that they need to get counseling, on and on. I'm sorry, but I'm not into that--- My mom is- she's one of these witches that's always trying to manipulate others. One time, she said that she was going blind. This really jerked my brother and my heartstrings. I called while she was in the shower. Her best friend said that my mom has the eye of on eagle. She couldn't believe me. She decided to go through my mom's Emails and saw that my mom was telling my brother and I that she was going blind- and she wanted me to quit work and go take care of her. Her friend asked my Mom about this, and my mom punched her out. She called me and apologized to me, as she'd been calling me up and laying a guilt trip about how I should visit my mother. My mother brain damaged a 3 year-old boy and left him out in the snow. Last week, my mom had somebody call up and pretend to be a hospital counselor and I needed to contact my mother. My son said that he'd tell me. I called the hospital and asked to speak to the counselor. They hadn't called me and they didn't have an employee by that name. I called the number and asked who it was--friend of my mom- My mother was an unpleasant young woman and she's become a dangerous nasty old woman and she doesn't drink--- A family goes through enough stress without twits telling them to get counseling or do a group hug or whatever. I did put down that I wanted as much dope as they could manage to give me. They said that I'd be sleepy-I told them that was the idea-they kept saying that it would be like the last few weeks or days of my life- and I told them that my family would feel better if I weren't writhing in pain and I was resting.

Meyati. I do understand a lot about the relationship with your mother. My father was the bad guy. My mom did whatever she was told to avoid a beating. We were never close. I stopped dealing with them for a good decade. I never regretted it. On occasion I would attempt reconciliation and they always acted like nothing happened. Their cover was that I was terrible person and they kicked me out. Told every relative. That hurt my feelings and then I figured, who cares? They don't. I do. All that drama was best left behind. I no longer saw healing and I dropped out. One can always find others who care more than them. Considering all the stress you are under, I would take a rain check and tell sibs to not talk about her unless she dies. I would use that break from the drama and manipulation to get through my illness and make the decisions that I want done. And most of all, I stopped being the peacemaker and the fix it go to.

My brother lives in Japan. He says that if she moves to Japan, he'll go to Saudi Arabia or Russia. Why Japan-she doesn't speak the language. My daughter insisted on my mother coming out for my daughters graduation for her Master's of Science. All my neighbors pitched in and only spoke Spanish and pretended they didn't understand English. My kids don't like her, they got tired of her Diva.